Parents of terminally ill girl oppose HSE application for 'do not resuscitate' order
Published 20/06/2014 | 13:05
THE parents of a terminally ill baby girl have opposed a High Court application by HSE for permission not to resuscitate the eight-month old should her condition deteriorate.
Today the HSE applied for a declaration that it will be lawful for medical staff treating not to administer cardiopulmonary resuscitation (CPR) and ventilation if her condition deteriorates.
The court heard the child's parents are opposed to the HSE's application because they are "hoping for a miracle".
The baby's mother told High Court President Mr Justice Nicholas Kearns she did not want her "rights as a mother taken away" by the HSE in relation to her child's treatment.
The mother said she is fully aware of her daughter's condition, and that she "will never reach adulthood".
However she and her husband want to make any decision that affects their child's life.
By order of the court the family or the hospital where the infant is being treated cannot be identified.
Seeking the order, Tim O'Leary SC, for the HSE, said the child has a genetic disorder for which there is "no known cure".
During the child's short life she has suffered from epilepsy, has trouble breathing, has sight and hearing problems and cannot swallow.
Children with this condition do not live beyond their first year, the court heard. The HSE, counsel said, following an assessment by expert medical staff, was seeking the declaration not to resuscitate because it is in the child's "best interests".
Should her condition deteriorate, her doctors do not want to see the child's suffering prolonged by invasive aggressive treatment. Performing CPR or ventilation, which she has received previously, has caused her pain and distress, counsel said.
Counsel said the child's parents have taken a different view and want her to have CPR and or ventilation.
The HSE, counsel said, fully appreciates the truly tragic and difficult situation the parents find themselves in. However the HSE say CPR and ventilation at this stage is not appropriate and have asked the High Court for guidance on the matter.
The child's mother, represented by Mark Harty SC, said the family had concerns about a medical report complied about their daughter. Counsel asked that the court order a further assessment of the child by an independent medical expert be carried out.
The child's mother told the court she wants CPR and ventilation to be performed on their daughter. She wanted to do everything possible so she can give her child the "care and love she deserves."
Since her child's birth she and her husband had been with her 24-7. "Our daughter is our life," she said.
She said they fear important decisions concerning their daughter are being taken away from her and her husband. Such decisions were for them and not the HSE to make, she said.
She did not want the HSE to make any decisions in regards to the resuscitation of their child, who she described as "a miracle from God" since the day she was born. She accepted that her daughter's life would be short.
She disputed that the child has suffered as a result of receiving CPR. She said that after a previous intervention her daughter was "smiling" and "giggling and laughing" at people.
While there had been difficulties with the medical staff in relation to the child's treatment, it was nothing personal and that she personally liked the doctors and nurses treating her daughter.
Mr Justice Kearns adjourned the case to allow an independent medical expert carry out an assessment of the child, said this was "a very, very difficult" and "sad situation" for the child's family and the medical staff who have been treating her.
The judge praised the girl's parents who he said have done everything they possibly can for their daughter.
The child is to recieve CPR and or ventillation, should the need arise and if her parents wish her to have it, between now and the time the matter returns before the court.